This post has nothing to do with crime or courts. It has to do with laws, though, and specifically the laws surrounding death.
In the past five years I’ve had to manage the deaths of two members of my immediate family. I use the word “manage” advisedly, because neither of them died instantly—no car wrecks, no heart attacks, no strokes. They died slowly while enmeshed in bureaucratic red tape.
Because of government regulations, my loved ones died traumatically.
Through this process I learned that while Alan Grayson may have been correct when he said Republicans want us all to “Die Quickly!,” the flip side of the death coin is that Democrats want us all to “Die Slowly!” and according to the rules set out by government agencies.
Sidebar: I have tried to warn everyone I know about the horrors awaiting them when their elderly parents begin to die, but no one will listen. Most people assume their parents have “taken care of things already”: that they have insurance, they have a living will, they have a regular will, they have siblings or relatives or neighbors who are watching out for them, or “they have long-term health-care insurance.” But I guess you have to go through it to understand that none of those “preparations” are a parachute. The government takes charge, no matter what the living will says, or the will says, or the insurance policies say, or even what the dying person says. So, I’m writing this as a public service. Ignore this post at your own peril!
Americans are not free to choose the way they die, any more than a condemned murderer can choose between the gas chamber and lethal injection.
Conventional wisdom says that when a person knows she’s going to die and her family knows, then mercifully they all have time to “come to terms” with the end of life. Conventional wisdom believes dying slowly is a good thing.
As usual, conventional wisdom isn’t wise. Dying slowly is just one damn thing after another.
Hospitals and Terminal Illness
When a person is admitted to a hospital for diagnosis of a serious problem, one of several bureaucracies tells the patient’s doctor what to do:
- if the patient has private insurance, then the insurance company takes charge
- if the patient is uninsured and eligible for Medicaid, then Medicaid takes charge
- if the patient is insured through the Veterans Administration or Medicare, then the VA or Medicare takes charge
In all cases, the doctor’s first task is to diagnose the illness as quickly and inexpensively as possible. If the diagnosis is that the patient has a terminal illness, the doctor’s next task is to make a prognosis: how long will the patient live?
How Long Has He Got?
The nature of the terminal disease is all important in determining how long it will take for a patient to die. A patient with heart disease or cancer is especially problematic, because few definitive tests are available. Most doctors can only estimate how long it will take for a given patient to die, and the estimate is just that—an estimate.
This is the first catch in the system: unless the estimate is that death is imminent (6 months or less) the patient cannot be put into hospice care immediately, even though that is the most-humane thing to do. Why? Because the insurers and the government don’t cover hospice care if the patient could live longer than that. (And, BTW, Alan Grayson is sadly mistaken if he thinks the people in charge of hospice care are Republicans.)
Discharge from a Hospital to Hell
If the patient has private insurance, then an accountant in the hospital will consult the insurance company to determine what treatments are covered and how many days’ stay in the hospital are covered. Normally, no insurance covers hospital stays unless their purpose is for diagnosis and treatment. As soon as a terminal prognosis is made, the patient is promptly discharged from the hospital and for a limited time sent to a skilled-nursing home of the patient’s choice (approved by the insurance company) for “recuperation” from the hospital visit.
Sidebar: A friend told me that when her uncle was diagnosed as having a terminal illness, at his bedside and in front of him the doctor told her, “He can’t die in the hospital.” After that she had to scurry around to find a suitable nursing home for recuperation.It makes you wonder why state governments bother to collect statistics about the recovery rates at hospitals, doesn’t it? They kick out anybody who’s dying.
If a hospital patient is on Medicaid or VA benefits when a terminal prognosis is made, a Medicaid or VA social worker will take charge. The patient will be discharged to a Medicaid-or-VA-approved skilled-nursing home for a limited period of time—if the patient is on Medicare, then to a Medicare-approved skilled-nursing home.
Recuperation in Skilled Nursing Facilities
Every stay in a nursing home for recuperation from a terminal prognosis by a hospital is a bureaucratic sham.
It is also a waste of money.
But that’s what our wonderful government insists on. The way the bureaucracy sees it: if you go into a hospital with a serious illness, then you cannot go home immediately even if you want to so you can die in privacy. You have to go into a bureaucracy-approved skilled-nursing home to lie in a hospital bed in a ward filled with other dying people so there can be no doubt in your dying brain that you aren’t long for this world.
Why does this happen? The government makes money from this: each skilled nursing home is licensed by the state and approved by the bureaucracies for a fee. The state and the bureaucracies employ thousands of people, including social workers, to inspect these facilities; they employ thousands of managers to oversee the social workers and other employees; and they collect income taxes from the money the dying pay or cause insurers to pay to these facilities.
Catch 22: You can never recuperate in a skilled-nursing home if you are dying.
So what happens when the social worker in the nursing home figures out that you aren’t getting any better?
Well, it’s simple: the social worker notifies the insurer, whether a private company or a government bureaucracy such as the VA, Medicaid, or Medicare. When the insurer hears that the patient isn’t getting any better under the care of the skilled nurses (surprise, surprise), then the insurer cuts off benefits.
Let me stress this fact: decisions about benefits are not made by doctors, nurses, or patients but by social workers and accountants. And “benefits” are all those things you need to die painlessly.
When benefits are cut off—usually with only a few days notice—the patient has to leave the nursing home or find a way to pay for an extended stay out of his or her own pocket. This is where the patient with private insurance is really screwed, because such patients usually have an estate (property, savings, investments) that disqualify them from Medicaid benefits that would permit an extended stay at government expense.
This is also where long-term health care insurance can kick in if the patient has it. The problem is that every elderly person I’ve known who enters a nursing home wants to leave it as soon as possible, n
ot lie there and rot in a ward of dying people. Everyone would prefer to die at home in their own bed with hospice services.
At the point when a dying patient is dropped by the insurance company or government insurance agency, the family (if there is one) suddenly finds themselves in a horrible bind. (Not that they weren’t suffering already.)
In my experience, though, it is at this point that the family realizes they have few, if any, options. Not many people have the wherewithal to take responsibility for the care of a dying person in their home or the patient’s home. (The friend I mentioned earlier actually took care of her uncle in his home with the help of a paid companion until hospice services could be provided for him there. That a family should choose to do this is rare. Most families in that situation would have to endure months of a heavy burden with a dying relative in their own home.)
This is also the point at which the family may understand for the first time that they’ve been railroaded—by the doctors, the hospitals, the nursing homes, the social workers, the bureaucrats. All along most of these people have been smiling at them and saying, “There’s nothing to worry about. We deal with these issues all the time. Let us take care of things. You don’t have to contact Medicare (or Medicaid or the VA or the insurance company); we do that. We bill them directly. Everything’s covered,” and the naive family member sighs with relief.
Then the bill comes in the mail, and the notice of termination of benefits, and the demands for a personal guarantee of the patient’s pharmaceutical costs—with a requirement that your signature be notarized and witnessed by two other people.
Suddenly the bureaucrats turn blank stares upon you, when you ask where exactly the patient should go now that he or she can’t stay in the nursing home any longer.
Where to Die for More Than Six Months?
This is the single most-important question everyone should ask themselves today: where will I go to die?
Over a decade ago I heard for the first time about hospice care. Someone close to my mother died in hospice care. It sounded like a wonderful institution. But I didn’t give it any more thought than that—and this was a huge mistake.
Hospice care isn’t a place; it’s a service. Hospice workers go into a dying patient’s residence when the prognosis is that the patient has six months or less to live.
Hospice is only available through an insurer. In other words, if a patient has private insurance, then the insurer must cover hospice care or else hospice care isn’t available at all. If the patient is elderly, then hospice care is covered by Medicare or if destitute by state-specific Medicaid. There’s no such thing as private hospice, because of Medicare and Medicaid reimbursement requirements. It’s the law.
Remember, hospice is only available if the patient has less than six months to live. If the attending physician can’t make that determination, then the dying patient has to go somewhere without the benefit of hospice-workers’ assistance. That means in many cases that a family member must care for the dying patient until a hospice social worker or nurse can be convinced that the patient’s condition has deteriorated sufficiently.
“That should be easy to do,” you say. Oh, yeah?
When my mother was diagnosed with a form of cancer that is inevitably fatal and was already in terminal, stage four, the doctors and nurses caring for her said, “To look at her you wouldn’t know she was sick at all.” The doctors gave her from “a few months to two years to live.” Hence, no hospice.
VA Hospice Benefits
One of my dying relatives was covered by the VA. Because I didn’t know anything about skilled nursing homes or hospice at the time, the terminal illness became a bureaucratic nightmare. If you have a relative who may be eligible for VA benefits, find out now. Find out what end-of-life care coverage the patient is entitled to.
VA hospitals don’t want anyone to die in the hospital any more than private hospitals do. They will try to kick your loved one out as fast or faster than a private hospital will. But to make things worse, there is no length to which the VA will not go to be able to ship the patient off to a nursing home if the patient has no living will that permits them to withhold life-sustaining treatments or is competent and requests treatment. (Some people don’t want to die, you know.)
My veteran relative became convinced—as a result of poor communication skills on the part of the case social worker—that because the VA would cover several weeks recuperation in a skilled nursing facility, it meant the disease was not terminal after all.
When Hospice Kicks In and You Kick the Bucket
My recent experience with hospice was not a good one. The hospice “team” (as they called themselves) bullied us all into doing what they wanted us to do, not what we wanted to do. At one point they even told me that I would not be “a good person” unless I followed their instructions—instructions that would have put a huge strain on my whole family’s emotional resources. I bowed to their demands.
The determination that hospice-care was called for, in this case, came from the administrator of the retirement community in which my mother lived—a bureaucrat, not a doctor. She contacted a hospice service (of her choice, not the patient’s or the patient’s family). As it turned out, my mother died in less than two weeks after the hospice care was initiated; and no one could tell that death was imminent until less than 48 hours before she died.
After the administrator’s first call, a hospice admissions nurse then visited the patient to make sure she was going to die soon enough. After that a social worker called me to introduce herself as the “team manager.” She demanded to know the most-intimate details of the patient’s life and our family. She also asked whether a pastor should visit the patient, but, even though I recommended no such visit, a “sister” soon showed up at the bedside to pray and sing hymns, which—had the patient been conscious at the time—would have disturbed her immeasurably.
Every day, a hospice nurse called me to describe the patient’s condition. Among the “comforting” tidbits the nurses shared with me was that dehydration (from lack of fluids) and starvation (because the patient’s stomach was involved in the cancer) cause the brain to produce endorphins, thus making dehydration and starvation pleasant. The nurses and social worker also decided when and what medications to administer. When the patient fell unconscious and began moaning, they decided more pain medication was unnecessary; instead they administered anti-anxiety drugs.
Finally, the social worker decided when a vigilant was required at the bedside. She also ordered my brother and I to get there as quickly as possible and to do some other things I would rather not discuss in public.
I was so distraught at that point that I blindly obeyed. It wasn’t until my mother died that I realized what bullshit it all was.
My dying mother and her family had no say whatsoever in how she was cared for after she was diagnosed with terminal cancer. Accountants and social workers made all the decisions. All of them. And at each step they decided to spend the least amount of money they could, to provide the least amount of care they could, and to administer the least amount of medication they could. They even decided that a woman who could best be described as a wiccan should have a Catholic nun pray and sing at her bedside.